My Endo Story, Pt II: Surgery was a success. Now, to live life.

Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

And not just yours.

Note: Some of the links go to specific cases and while my intention is compassionate, I understand if you want the links to you or your loved ones’ cases removed and will do so at your request.

On the 25 of July, 2018, I under went a laparoscopy accompanied by excision surgery. I had a complete hysterectomy, meaning that while thankfully both ovaries were kept, everything else was removed – the tubes, cervix, and uterus. This was done because adenomyosis was confirmed, as well as endometriosis, which can cause ovarian cancer[1] in the long-term. Most ovarian cancer, the name being a misnomer (as the term for many women’s issues are due to lack of research and concern), at the root, has been shown to begin in the tubes.[2] Consensus is that taking the ovaries create unnecessary risks, and since endometriosis grows its own estrogen — something most gynecologists don’t know (and often don’t care to find out) — the ovaries have really nothing to do with its recurrence[3] – any endo (a single cell) that is left is what causes symptomatic recurrence. The lead surgeon, among the best in the world, assured me that all of the endo was almost definitely excised. I believe it. Because since the surgery, the only pain and discomfort I have had can be traced to normal post-op reactions. Up until surgery, I was having many endometriosis symptoms (not just pain) constantly — that means without interruption, not just monthly, weekly or daily — for almost a year. Prior to that year, I still was experiencing three or more symptoms at any given time since I was, at the oldest, five years old. There are a ton of symptoms that widely vary, including with which type, but given repeated sexual trauma as a toddler, it is likely that this is why I started showing symptoms prior to puberty. My case substantially supports part of Meyer’s theory over the two others in terms of the pathogenesis of the disease.[5]

 

My appendix was removed also due to endometrial involvement, and as I suspected (because I could literally feel it internally), there was a concentration of endometriosis under my left ovary.

Luckily, I did not have to have a bowel resection and only stayed one night in the hospital.

Medically cleared recovery after a surgery like this generally requires a full two months. Until mid-September, I am medically advised not to lift more than 10 lbs (much to my furbaby Oskar’s dismay – or rather mine, I guess – he tolerates being picked up but isn’t a huge fan of it), am discouraged to work my core a lot, and of course, cardio like HIIT, jumprope, and running are out of the question right now. Due to the removal of my cervix, I can’t swim, either, (which sucks, but it’s a small price to pay for my intestines not falling out or not getting infections). Thanks to medicine, I got through a clinic independent of the horror show network of doctors and hospitals I’d been previously saddled with, and I was starting to get into yoga, which I plan to return to with modifications. Thankfully, I rarely need the medicine – or any – now, although not completely (yet). I am continuing to take certain supplements, as even though it was very likely the endo depleting my vitamin B[6] and D3[7] stores, those are crucial for well-being, and it will take some time anyway for me to become nutritionally whole. I will also finish my bottle of turmeric (and may continue taking this supplement as well) and while I won’t be extremely restrictive with my diet, I am going to continue deeply limiting my refined sugar intake (a known inflammatory) and dairy. The doctor, while a lead surgeon in this field, is fallible like the rest of us, and being cautious will also slow the chance of recurrence if there is any endo left. Refined sugar is also, simply, not healthy regardless, and the benefit vs cost of dairy is arguable, not just in terms of individual health but global and environmental, too. Beef is another thing I’m not keen on consuming any more of, for both reasons as well.[8] However, as noted in the important sequel to the aforementioned article, one should also note that certain alternatives  (e.g. milk from almonds which uses a ton of water and land or milk from cashews which can easily burn – and mar – the hands of workers[9]) or strict veganism aren’t necessarily the best options, either.[10]

Continue reading “My Endo Story, Pt II: Surgery was a success. Now, to live life.”

“Freedom is what you do with what has been done to you.” – Jean-Paul Sartre

I haven’t been hiding that the disease I am trying to manage right now (endometriosis) is both horrific and all-consuming and that I feel that is in fact quite literally killing me. I have had near-death experiences before and in April I did die for a time, or at least was closest to death than I ever was, being in a coma and consciously having to make the choice to stay alive. I didn’t choose to live because I felt I had to tie up loose ends. I chose to live because amindst all of the darkness, I was able to find hope that I could get effective treatment and live a life I wanted to live. That treatment is still far away even with the help I’ve been receiving and am very grateful for, and I may not get it before my insides are scarred beyond functioning or I develop serious heart problems[1] or cancer.[2] (That being said, I know I am being extremely annoying about this, but I am literally pleading for my life and trying to get the information out there to save others’ as well.) There are a lot of things I want to do and can’t, but I’m focused right now (and trying to stay focused) on what I can do.
Blogging has been helping me deal with this along with other issues, and I intend to start vlogging about endometriosis and my case specifically very soon. I will not let my suffering be meaningless when I have learned and experienced so much that can contribute to others getting help sooner.
Part of living the life I want to live is becoming who I want to be. I have many limitations right now of many varieties, but I can choose to continue working on myself, regardless of how little time I may or may not have left. Truthfully, I think that is the most honest motivation for this blog in particular. Helping others and advocacy are both integral to my soul’s survival, a huge part of who I want to become, and while this blog does not have a big reach and has probably not bettered anyone else’s life, it has helped me greatly, I have learned better to self-advocate, and so my entries here have bettered my own life, all of which have helped equip me with better skills and ability to reach out to others more effectively elsewhere.
Recovery is not a destination but a process.
This is, indeed, truly a recovery blog for me.
That being said, there are things I talk about here that I feel I need myself to embrace more fully. We are all hypocrites in one aspect of our lives or another, whether always or in certain instances, but hypocrisy is something I have been working very hard for years to get out of my system. I know it will never be 100% out. I am human. I am fallible. But I am human, which means I also have a great capacity to change and take charge of my own behavior.

Continue reading ““Freedom is what you do with what has been done to you.” – Jean-Paul Sartre”

On body positivity & awareness

When someone ties their physical form to their integrity or character value, that is when they have an increased likelihood of intentionally harming their body, and devastatingly, society encourages this connection all the time. You can want to lose weight to improve your health – or gain weight to improve your health, build muscle to improve your health, etc. But when you do it in pursuit of becoming a person of “value” or increasing your worth as a human being, that is when you are really hurt inside, and you need to begin healing yourself.

I am 162 lbs now, when I was ~195 in mid-April. While to most people this sounds like a cause for celebration because society sees fat as so “unattractive” (and yes, unhealthy but that’s often secondary to the main message and for awful reasons), losing this much so soon is not healthy either, especially because of how I lost it – being unable to properly take in and digest food. I want to take this time to especially send my love to those with illnesses – of any kind, whether it be endometriosis, cancer, Chron’s, EDNOS, etc – who are overweight, lose weight then because of the illness they’re suffering from, only to then get congratulated on their weight loss when they actually feel like they are (or actually are) dying inside. It is devaluing, dehumanizing, and invalidating, and for those with eating disorders and associated thoughts and behaviors, those experiences significantly encourage the chance of related fatality. That being said, eating disorders have reportedly the highest fatality rate of any mental illness, and there are plenty of people who start out as “heavy” before literally overexercising, starving, or purging (including vomiting and/or excessive laxative use) themselves to death.

 

Note: Because of the tragic self-violence of disordered eating, I refuse to more “gracefully” word that.

 

While many people who have lost a great deal of weight are happy to have lost it, feel good about having lost it, and have lost it under medical supervision and/or through a healthy way, please always consider the possible ramifications of telling someone “Wow, you look so good after all that weight loss!” or tbh, commenting on people’s weights at all.

 

For me, today someone close to me commented in a way that was actually very considerate and was not at all hurtful to me (but validating instead). She had noticed the rapid weight loss and was concerned for me, knowing why it has been happening, and she treated it compassionately.

 

But I can’t tell you how many people have seen me in the past month and told me, “Wow, you look great now! Look at how much weight you’ve lost!” to which I must stifle a frustrated “I’ve lost weight because my body literally won’t allow me to eat and drink due to medical problems and I am so hungry and thirsty and miserable.”

 

The fact that I haven’t been able to leave the house much and so I haven’t seen many people is a true testament to how painfully common this response is.

Continue reading “On body positivity & awareness”

Finding strength in your “weakness”

Reducing the impact of a vice isn’t necessarily trying to eliminate it. We will probably always have at least a fraction of our childhood vices still in us. Instead, try to funnel it into something good, utilizing it differently to accentuate its potentially positive reciprocal.

Couldn’t sleep at all due to the endo pain but was able to fill eight pages in a random notebook with this before typing it up. Help me sleep. Please.

I have long maintained that many beautiful concepts have deep tragedies to them. I see, acknowledge, and appreciate the oft-ignored nooks and crannies of experience and of being, a strong witness to their darknesses, shadows, and the gems enveloped (or even later produced) by them. I’ve come to believe it’s part of the INFJ type, and perhaps among the reasons we are nicknamed “the Mystic” is because we are likelier to be privvy to the otherwise lost or forgotten gifts of deeper universal significance.

My personal outlook on this has taken a long time to develop. Aspect I share with others that I saw as valuable, beautiful, or forgiveable in them were not in myself. I couldn’t see my victories — small or big — as events or processes worth celebrating but congratulated others for things they themselves reportedly saw as minute gestures. Much of this stemmed from self-loathing, feelings of worthlessness and futility. I had higher expectations for myself than I had for those around me, marginally so. But I criticized my efforts, thoughts, feelings, and conduct in ways completely counterintuitive and ultimately counterproductive to growth. I was angry at myself for imagined attributes I didn’t really have or attributes I associated to others in completely inaccurate ways. I think it’s pretty normal for children and younger adolescents to make faulty connections like this. Normal but unhealthy and sadly, I’d say unhealthy habits, thought processes, self talk, etc are all extremely normal, even in adults.

Having C-PTSD and growing up with abuse from pretty much all directions however, I took those faulty connections to some pretty devastating extremes. (Trigger warning: Disordered thoughts – eating disorder + c-ptsd & casual descriptions of SI behaviors)

Continue reading “Finding strength in your “weakness””

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

Continue reading “My Endo Story”

The commitment to move forward & guilt vs shame

On accountability and the benefits of remorse, its surprising relationship (or lack thereof) to shame, and thoughts regarding working towards making a better future for ourselves by learning from our past.

Note: I use past tense for some people who are still currently in my life as I am going to eventually separate myself from them by legal means. This is a process so it takes time but want to clarify that emotionally, I am finally done letting my remaining toxic interpersonal relationships affect me. That being said, you can love someone still and know it is an unhealthy relationship and thus separate yourself from them. This will be another post at a later time but some notes on toxic interpersonal relationships here.

I have made many egregiously bad choices in my life. Among them are selfish and destructive choices I feel rightfully guilty over, such as the long-term and vile harassment of another person online, spurred by insecurity, both self-loathing and conceit, and self-righteousness. Another is blatantly dismissing the testimonial of an abuser’s little sister who had entrusted me with the secret that her older sister had broken her arm. This should not have remained a secret, and she and I both suffered for my denial of a very real problem. Out of more self-righteous thinking and behavior, I have meddled in situations that are not mine, further worsening some people’s circumstances in the process. While I would like to think they were purely well intentioned, I know my self-righteousness and own feelings of victimization have played a huge role in these particular actions, which is a major reason why my approaches to helping have sometimes caused further damage instead. Little works in crises when one is letting their inner (and still-hurting) child lead the way.

These wrongs that I committed hurt and even worse, potentially traumatized or helped traumatize others. My guilt here is justified and teaches me to not commit these sins again. Guilt is a positive emotion when it is about true heartfelt remorse. It is inspired by awareness, both of self and others, accountability, and is more central to ethical behavior than religion or law. The reason for this is that guilt is an internal measurement, and regardless of whether someone is more extroverted feeling, like me, and pays close attention to external rules and cues, or is more of an introverted feeler and pays close attention to internally formed rules and cues, guilt is what betters all of us socially when, like all discomfort and pain, we choose to grow from it.

For someone whose auxiliary function is extroverted feeling, (Fe), I learn too slowly. I effect change too slowly. And when I am unusually sick or stressed, I sometimes fall back on unhealthy and harmful behaviors, often again spurred by self-righteousness and unresolved feelings of victimization. I do recognize the urgent need to stop it, as those behaviors help no one and cause more hurt than resolution. I raise my voice, and when I say “raise my voice,” I mean I yell when I get angry.  And I become someone I myself can’t stand because I know I am causing hurt, and for reasons that at the end of the day, conflict with the behavior. I want people to listen and understand because when I yell, I feel hurt and ignored or misunderstood. But I know – when I am thinking rationally – all anyone does when they yell like that is hurt others and themselves. That’s why I have asked people to tell me when I am starting to raise my voice, so I can check myself and quiet myself down. It’s no one’s responsibility but mine, but I lose awareness, the sight of the goal (positive inter & intrapersonal development), and rationale in the heat of the moment and still need external reminders to calm the f*ck down. I have only gotten loud like this in the past three years. I’ve come to realize why but reasons for an unhealthy behavior do not and should not ever be confused with excuses. Still, unlearning this has been hard, and I have made only minimal progress since it was brought to my attention almost a year ago. Guilt, or perhaps the more specific term and meaning — remorse — is powerful and can greatly help to rectify bad behavior, but it is not the lone motivating force. I am making progress however and through identification and an implementation of coping skills, I hope to make this a past behavior more quickly.

Guilt vs shame

There is another feeling many people may relate closely to guilt – I used to too – but I caution strongly against making them so close. I can’t really remember where I first learned of the vital difference of meaning of these two words, but I know that actually proactively learning the difference took a long time even after. I do remember staring at the worksheet/handout in my early teens, trying to sift through events and circumstances in my head while utilizing the words’ very different meanings but having great difficulty in doing so. (Note: TRIGGER WARNING for disordered thoughts, including thoughts related to disordered eating and sexual trauma.) Continue reading “The commitment to move forward & guilt vs shame”